It's self-evident whether or not one has CP.  If you don't know you have CP,
what good would it do to look for a site that deals with "aging and CP".
Guess common sense can sometimes be an oxymoron.

Call it a bad day, but the original intent was to create a source-point for
individuals looking for clinical info on the effects that CP has on the
aging process.  Had no idea that this silly little idea would create so much
controversy.

If this Jonathan is not a geezer, what possible interest could this info
hold for him?

Sorry, Kat, Bobby, Ken and all.  I know I said I'd keep my yap shut, but
sometimes something so inane comes down the pike that it has to be
addressed.  God!  No wonder we have a dozen regulars and 300 lurkers.

-----Original Message-----
From: Trisha Cummings [mailto:[log in to unmask]]
Sent: Wednesday, July 17, 2002 8:32 AM
To: [log in to unmask]
Subject: Re: A new aging survey for the list


well Kat,

    Without further belaboring the digressions - my original point was to
Kyle to perhaps consider that not everyone knows they have CP - due to a
number of reasons and perhaps he can include these people - who will need
helpful information just like diagnosed folks. I was a health care
professional when I was younger and more able bodied, so perhaps the subtle
differences are simply more familiar to me.

If you call a rose a daisy - it doesn't make it so. Jonathan's parents have
hampered his physical abilities thru their denial, and the school systems
ability to help to him - ironically, since the teacher recognize there is a
problem - they have consulted with the special PE teacher and the PDI's.
Jonathan has been in our circle for awhile - execpt the man who fell over on
me - I hardly ever accost strangers and ask what's wrong with them.

                            Trisha

> -----Original Message-----
> From: Kathy Salkin [SMTP:[log in to unmask]]
> Sent: Tuesday, July 16, 2002 5:32 PM
> To:   [log in to unmask]
> Subject:      Re: A new aging survey for the list
>
> Well, yes, I see all that, but we must remember that CP is a diagnosis,
> just
> as polio is a diagnosis, and so are muscular dystrophy, multiple
> sclerosis,
> menningitis and cerebral infarction, all of which can result in injury to
> the
> brain and spastic muscles.  That's what I'm objecting to.  Yes, CP is a
> disability and so is polio and other conditions and side-effects of
> illnesses
> or conditions.  But I don't think I have the knowledge or training to
> distinguish CP from a stroke victim, or MS or MD.
>
> I have a great deal of respect for what others want to call themselves.
> If
> they prefer not to see themselves as disabled, that's their call, not
> mine.
> I'm not going to impose my thinking on them. If they wish to be in denial
> that's their thing.  Names have power, and I'm not going to unsurp anyone
> of
> their own power by labelling them something they don't wish to be
> labelled.
>
> Kat
>
>
> On Tue, 16 Jul 2002 17:12:17 -0400 Trisha Cummings <[log in to unmask]>
> wrote:
>
> Hi Kat,
>
>            It was the brain damage at birth part - that was the tip off.
> I
> did talk to the man for sometime and his girlfriend at length. Amber and
> the
> therapist think Jonathan is a Hemi - we could be wrong - but he looks
> carbon
> copy of Amber and as Amber says - no one holds their arm like that for
> balance. Personally I don't care what you call it - its going to have
> aging
> similarities to CP.
>         Lots of people - especially older ones aren't comfortable with
> disabilities and in the old days - the kids where hidden away - I remember
> the little girl who sat behind me at the beginning of 1st grade - had some
> problem - and they just took her away one day - and I would see her at her
> house playing - I have no idea what was wrong with her - But I remember
> her
> to this day - and I wonder how has she fared with no education? Of course
> that was the 50's - thankfully the majority of us have moved into the 00's
> with some better ideas - but what about 30 years ago - 20 years ago?
> Leaves
> some room for some possible doubt - especially if like Jionathan's parents
> you are macho male - who can't handle a disabled son. Who knows - he may
> well only have a deformed knee and need to hold his arm under his chin for
> balance( just like Amber) ( and therefore it has atrophied - just like
> Amber's) - and therefore no be able to use his hand - he was born early
> and
> ill becasue his mother is diabetic - But I tend to think - his parents are
> ashamed of the CP - they refused any help for him in school - so he has no
> IEP - his parents frustrate the teachers who want to help him.
>
>                                       Trisha
>
>
> > Excuse me, but just how do you know someone has CP?  I realise you see
> > something like awkwardness in gait and spasticity and see CP, but there
> > are
> > other things going on you may not be aware of.  I have CP but I don't
> > assume
> > someone else has just because he or she looks like they do.  It could
> have
> > been a stroke or menningitis, or an isolated case of polio; you don't
> > know.
> >
> > Kat
> >
> >
> > On Tue, 16 Jul 2002 16:31:50 -0400 Trisha Cummings <[log in to unmask]>
> > wrote:
> >
> > Kyle,
> >
> >    I think your website is a great idea.
> >
> >    Don't let the "little" folks get you down.
> >
> >    One thing to think about is not everyone with CP knows they have CP -
> I
> > ran into a man in the McDonalds by my house - he was standing just like
> > Amber and stubled and I grabbed him before he hit the floor - and he
> said
> > I
> > am disabled - and I said yes I know - you have CP - he said no I have
> > brain
> > damage since I was a baby. and so on ( he is Hemi- like Amber). And
> > Jonathan
> > who goes to school with Amber (also a Hemi like Amber)  - and he has a
> bad
> > knee - But Amber, and I and her special ed teacher know its CP. It think
> > denial and perhaps like with Amber - rthey never said the word - I read
> it
> > in a book - leads people to not know they have CP - just that they are
> > disabled. I was a premie, had braces and special shoes when I was little
> -
> > and to date still have this walk funny - right foot points out to the
> > right
> > at 45 degree angle, the attached knee angles off to the left, and the
> hip
> > joint pops so bad sometimes - it hurts and feels like its coming apart.
> > Who
> > knows what you call that - I call it darned awkward.
> >
> >    Go for your website - when you change your name from Kyle Cleveland
> to
> > Cerebral Palsy Man - then maybe your are taking things to seriously - in
> > the
> > mean time you are doing a great thing to help others.
> >
> >                               Brightest Blessings - Trisha
> >
> >
> >
> >
> > >  Sign me up for the survey, Bobby.
> > >
> > > I met with an old friend for breakfast yesterday (old in the sense
> that
> > > we've known each other for a long time, but we still talk at least a
> > > couple
> > > times a week).  I was telling him about the web page idea.  Could not
> > > believe his response.  Something along the lines of, "Well, you know,
> > you
> > > have to be careful not to invest too much time into something like
> this.
> > > It
> > > could take away from your family time.  Also, I would hate to see you
> > > start
> > > taking your 'identity' from your disability."
> > >
> > > It's amazing how people are so quick to pour cold water on other's
> > > excitement and so slow to encourage.
> > >
> > > -Kyle
> > >
> > > -----Original Message-----
> > > From: BG Greer, PhD
> > > To: [log in to unmask]
> > > Sent: 7/5/02 12:20 AM
> > > Subject: Re: A new aging survey for the list
> > >
> > > In a message dated 7/4/02 7:20:44 PM, [log in to unmask] writes:
> > >
> > > >I would, of course.  And you might add "paraplegia" to the location
> > > list.
> > > >
> > > >Kat
> > >
> > > I will be cantankerous and stick with diplegia. LOL Actually, I plan
> to
> > > reformat Carla's original 10 questions. I hope we get a better
> response.
> > > How
> > > far along are you on the new web page?
> > >
> > > Bobby